August 14, 2017 marked the beginning of G and H’s last week of camp. That meant it was time for me to start getting to work on the endless to-do list I’d put together for myself in the beginning of the summer. (Better late than never?) I ran errands, organized closets, and began cleaning out the space that we hoped to turn into an office. The day was relatively productive, until about 1:30.
At 1:30, Matt came home from work with a severe headache. I greeted him at the door with two Tylenol and he went straight upstairs to rest. When I spoke to Matt’s dad (either while Matt was on his way home or after Matt had fallen asleep) Matt’s dad told me that Matt was pretty confused in the office. I don’t remember exactly how he was confused—my guess is that the things he said didn’t quite follow a logical thought pattern—so I can’t give any honest details or examples to explain what I mean when I say confused.
Ultimately, how he was confused is irrelevant. Simply the fact that he left work is crucial. For the last year, despite other bad days, Matt had always found a way to function at work.
I called Matt’s doctor at Duke to tell them about the severe headache and confusion. By 2:33 I hadn’t heard anything back. I texted a friend that I was worried I’d have to take Matt to the emergency room. But I didn’t know. I spent the next hour pacing, Googling, and sneaking into the bedroom to make sure Matt’s chest was rising and falling with breath.
At 3:30, Matt was still sleeping and I still hadn’t heard anything from Duke. I called and left another message. I give up the pretense of sneaking into the room. I folded laundry outside the bedroom door, read a manuscript by the bedroom window, and found any excuse to be within a moment’s reach of Matt.
In retrospect, I can see that I condensed all the un-Matt-like behaviors and blips and headaches over the past few weeks into this particular headache and long nap. In the moment, I was not that clear headed. I felt simply terrified and abandoned.
At 4 p.m., the nurse at Duke returned my call. I remember the intense relief I felt to see the Duke number flash on my phone, to hear the nurse’s voice on the other end of the line. All the stress and anxiety of the last two and a half hours poured through the phone line as I gave her a detailed account of everything. With unwavering practicality and a practiced calm, she told me to let Matt sleep for another hour and to take him to the emergency room if the pain wasn’t gone by the time he woke up. The fact that I didn’t hear panic in her words, calmed the panic in my world.
At 4:37-ish, Matt woke up. His headache was gone.
A few minutes after Matt woke, the kids came home from camp and it was as if nothing had ever happened. No confusion. No extra Tylenol. Crisis wasn’t averted because there was never a crisis to avert. I remember chastising myself for letting my imagination get the better of me. I remember thinking I’d worked myself up over nothing. I remember thinking I couldn’t trust myself anymore.
I don’t remember if I told Matt how panicked I was. My guess is I told him nothing, because why worry him.
In the grand scheme of the day, the total time spent in panic mode was about three hours. I spent two of those hours waiting for a call back. Barely worth mentioning. And also, somehow a lifetime. In those two hours, I felt the life I knew slipping away. Those two hours waiting for a call back illustrated a problem with no easy solution. Brain cancer is a disease that is impossible to navigate alone. Blips and headaches and un-Matt-like behaviors became part of the daily routine, and yet, so often there was nothing any doctor or nurse could do to help, except maybe make us feel less alone in the battle. Sometimes that was all we needed.
Matt and I never lost sight of the fact that we were not the only patients waiting for a call back or waiting for the doctor to review a MRI. We understood the doctors and nurses were working tirelessly for the benefit of all patients. We also just began to feel abandoned when we most needed someone on our side. Maybe that’s not fair, but it’s true, and it becomes a central theme in the story as our world spins out of control.
The hopeless truth is the ending of this day wouldn’t have changed our story’s ending, at all. The hope-filled truth is that no matter how this day ended, we wouldn’t have stopped believing we were destined for a happily ever after.